Re: metabloic crisis? reply to and question for all

[Guest guest]

Hi and all,

Slap in the face is a good way to describe Craig's current regression. I tend to downplay his condition. I'm not sure if being told for years that nothing was really wrong and all the tests always coming out normal for so long did it or what? I am so used to seeing such unusual things that I don't treat them like the emergency they are sometimes! Looking back it is amazing Craig pulled through all the episodes he did without any outside help.

I'm just trying to understand what a metabolic crisis is. When he is weak, ataxic, in pain, having seizures (like he has been more lately) is that a crisis necessarily? Would he need fluids or some treament even if he hasn't been sick? Craig has been like this so often, although he hasn't been in awhile, that we've just "got used to" living with it. Plus, going to the hospital has never helped because they didn't know what to do. We just try to make him comfortable, keep feeding him and giving him drinks, and wait for it to pass. Should we be doing more?

Thanks so much,

Donna

Re: question regarding disease progression (Donna)

Gracie is 2 1/2. She does not have a specific form of mito, but has a solid diagnosis of mito. Dr. Cohen has told us that there will never be a specific name for her type in our lifetime, frankly because she is the first of her kind. She started getting "sick" at about three weeks of age, but it was all things we passed off as colic, reflux that type of thing. She was about three months when we really started to figure out that it was much more serious. She does have liver disease from mito and a g tube (not for feeding), but thankfully she has never had a seizure or anything like that. Actually she is much healthier now then she was as a baby.

Her problems with walking and whatnot have only started within the past 6-8 months or so. She does seem to have some overall weakness, but nothing too serious. We did get her orthotics for her shoes wich really seem to help her balance out, when she is healthy. It does not seem like they are much help at all when she is sick.

We also have noticed her having brown outs without any real explanation. We usually pass it off as something, but it scares me to wonder if she is really doing this with no real excuse.

I had just re read your first email, and you mentioned his stare. I have noticed this with Grace when she is really down. When she is like that she is always pretty sick and we end up in the hospital for IV fluids. Have they considered giving your son some fluids? I know it sounds bad having them in the hospital, but at least for Grace it does wonders. Usually within 12-24 hours of fluids, she is back to her old self again. They usually tend to keep her longer because she will still have a fever or something, and they cannot take her off until she is symptom free. We are still trying to draw a line of when Grace needs fluids and when not. Currently we are doing fluids for vomiting, fever or diarreah. If she ends up showing something on a MRI we will then need to consider having her in for colds and everything else (thankfully her MRI is normal, currently.)

I hope your son bounces back from all of this. I know how scary it is. I tend to let myself think like she is fine, when we go for awhile without anything. It is such a slap in the face to get it all back again.

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